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Do you have Leukemia but CBC kept coming back normal??

My symptoms:

Unexplained bruising on legs going on 6 months.
Tiny red pin point spot scattered on my chest, legs,arms and 2 new ones on tummy.
terrible leg and arm pains since I was 12, I'm now 28
Bad headaches that make me nauseous and feel rush of blood when i turn head or bend over to pick something up.
I have been feeling tired, but I'm a working mom of 2

6 months ago I had donated blood and Red Cross rejected it because i tested positive for HTLV-1 (Human T-cell Lymphotropic Virus type 1) whe I started getting bruises I went to my Dr who ran more tests and confirmed HTLV-1 but said CBC looked normal, he sent me to Infectious Disease specialist and Neurologist for headaches. Infectious disease said she would consult with Hematologist on what other tests to order and just yesterday she left a voicemail saying everything as far as the labs for bruising came back normal??? But she made no mention of the HIV test she said she had ordered nor the Blood Smear test I requested, will the hematologist follow up with me on this?? I have an MRI scheduled by the neurologist this week.

Any Leukemia patients have similar symptoms and had normal CBC?? My platelets were 200, my WBC was 10,000 and RBC was I think 8,600.....I don't know what to think but I don't want to miss it if I have it and end up having it diagnosed when its too late.

My platelets are consistently between 30 and 18 and I have platelet transfusions regularly. I have only very minor busing. Talk to the doctor about why you are having problems. I have no Cancer at this time but I do have MDS (pre-cancerous) caused by chemo. Don't let this freak you out, but you might consider in depth blood testing to confirm that you don't have Cancer. Your numbers are not that bad.
Chuck

Chuck was diagnosed with A.L.L. in Nov, 2009 at age 61,
Remission, July 2010, Diagnosed with MDS in Jan. 2011
Stem cell transplant in July, 2011, Just passed day 130 post Tplant.
=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=
Cancer might rob you of that blissful ignorance that once
led you to believe that tomorrow stretched forever.
In exchange you are granted the vision to see each today
as precious, a gift to be used wisely and richly. (UCSF 11 Long)

My platelets are consistently between 30 and 18 and I have platelet transfusions regularly. I have only very minor busing. Talk to the doctor about why you are having problems. I have no Cancer at this time but I do have MDS (pre-cancerous) caused by chemo. Don't let this freak you out, but you might consider in depth blood testing to confirm that you don't have Cancer. Your numbers are not that bad.
Chuck

Chuck, are you saying that your MDS was caused by chemo? Can I ask which chemo please? And to the gentleman with HTLV, definitely consider treatment with Vizada, since a patient in Greece was able to clear the virus with an eight month dosage.

Yes. I didn't have some of the symptoms you have. I had extreme fatigue, enlarged lymph nodes and a very slightly elevated high white count. For 7 year I complained and was dismissed. I went ro the e.r. in may of 2011 with a large lump in my neck (I had a dicectomy in 2004 ane Dr dismissed it as a muscle spasm). It was by accident in June, my husbands Dr took one look at my neck and knew immediately it was a lymph node. I was in surgery the next day, being told I had leukemia, lymphoma b cell malignancy. Needless to say I was furious. All these years, complaining of body aches, headaches and always so tired. Not to mention they ignores the 40lb weight gain (has, its in my thyroid too) my advise for everyone is YOU KNOW YOUR BODY BETTER THAN ANYONE!! IF YOU KNOW SOMETHING IS OFF....PLEASE!!!! KEEP AT THE DR, HOUND THEM IF U MUST, FOR FURTHER TESTING. If someone were to take my blood counts now, and didn't know I have leukemia and been through chemo, they probably wouldn't pick up on it. Leukocytes are very important too. I pray God bless all. My sister (my only sibling) was diagnosed with breast cancer the "exact" same day I was diagnosed with cancer). It's been very trying times. Massachusetts General Hospital, bone marrow unit, has been incredibly helpful, courteous and have awesome Dr's!!!!

Everyone, please get tested for HTLV - the poster who said that she had 16 years of arm and leg pain, fatigue, and other problems is a classic case. Same goes for the lady who complained for 7 years - testing positive for HTLV at least tells you WHAT is causing your health problems - doctors are in denial that HTLV is a common cause of cancers. Since Chuck is an MDS patient, I'm sure he's heard of Vizada (Azacytidine), which is used to treat MDS. A recent MDS patient in Greece was not only cured of MDS, but also cured of HTLV (currently negative almost a year post treatment). The bottom line is that every cancer screen should include an HTLV test, and everyone with HTLV should consider the Vidaza treatment.

HTLV is a risk factor. So are EBV, CMV, HIV, HPV, helicobactor pylori, HSV and the list goes on. Just because you have a risk factor present does not mean you will go on to develop cancer. While I agree your message should be heeded I do think you are being alarmist in your postings.

HTLVhelp.Com

CM,

Yes, other pathogens are related to cancers, examples from the list that you provided would be EBV causing Burkitt's Lymphoma, HPV causing cervical cancer, HCV causing liver cancer, HIV causing KS, etc. And yes, you're correct that not everyone with a specific virus goes on to get the cancer related to that virus. But for the people who do develop a cancer, who want an explanation of "why is this happening to me?", drawing a line from the cancerous condition to a virus might be alarmist, but it also is an attempt to provide an explanation (and treatment approach if one is available). And yes, I am being intentionally alarmist to counterbalance doctors' complacency about HTLV - no citations are needed to prove this, just go to your doctor and ask "What do I do if I HTLV?", and watch them not blink an eye about how to proceed and/or treat. I'm doing what I'm doing so that people with HTLV aren't shunned like HIV patients were in the 80's, I hope that you can respect that. If you don't have HTLV, then maybe you can't relate, but if you do have HTLV, you'd be happy to have someone take up your cause. And to further the alarmist point, I do believe that HTLV is involved in some unexplained health disorders, yet oddly is not routinely tested for, while routine testing occurs for HIV, HCV, EBV, etc. Thank you for agreeing that my message should be heeded.

PS

I just read an entry by Ann on the web site called POZ where she pushes for everyone to get tested for hepatitis C - not just tested once, but routinely tested. Here I am being made to feel like a fool for suggesting one time testing for HTLV. The world really is insane.